Sunday, December 25, 2011
Friday, December 23, 2011
Melanie Bowen - Disease and Healthy Diet Connection
Disease and Healthy Diet Connection
Learning that you have a chronic or terminal illness is devastating in every sense. Cardiovascular disease, cancer and diabetes are amongst the top forms of chronic illness that can have terminal outcomes on life expectancy. From the moment your physician explains the diagnosis, course of the disease, prognosis and treatment options a flurry of confusion can overwhelm your mind. It can seem like a completely unmanageable position, but in all the aspects of chronic or terminal illness that you cannot control, there are factors in your life that you can such as your dietary habits.
Research has come a long way in linking a healthy diet to reducingng the risk of complications in a range of chronic illnesses. Good dietary habits not only prolong life, from chronic illness like heart disease, which is the primary cause of illness related death, but also benefit health in even rare forms of cancer like mesothelioma. In fact, the most notorious culprit leading to chronic diseases or accelerating the course of an existing illness is obesity, which is directly linked to dietary habits.
The benefits of a healthy diet abound and it is because the foods contained in a well-rounded diet actually have protective substances that fight disease. For instance, the cruciferous vegetables, which includes broccoli, kale, onions, cabbage and cauliflower, contain specific compounds called isothiocyanates. The compounds counteract the toxic effects of cancer causing carcinogens that attack the cells in your body.
A 2009 study published in "Cancer Epidemiology Biomarkers and Prevention" found that study participants eating a healthy diet containing cruciferous vegetables had a lowered cancer risk, although ongoing research is warranted to find the exact relationship. But when it comes to improving your health, even the slightest chance that eating your veggies can make a difference is motivation enough to add them to your daily meal plans.
Another preliminary study from 2011, published in "Cancer Causes and Control" tested the effects of daily dietary fiber from grains on reducing the risk of cancers of the head and neck. The study found that a relationship exists, particularly for women. Whole grains are also well known for reducing the risk of heart disease related to high-cholesterol levels. Wheat bread, bran cereal and oatmeal are amongst the many whole grain foods you can add to your daily meals for protecting your health while also providing a nutritious source of energy.
Adopting healthier eating habits takes a little bit of know-how and a lot of action on your part. Keep it simple by choosing fresh vegetables and fruits over frozen, canned or packaged varieties. Fresh offers you the most body protective nutrients without the additives like excess sodium or sugar. Replace white grains with whole grains to boost your fiber intake, which is crucial for colon and digestive health. Opt for lower-fat versions of dairy and choose leaner varieties of meat like skinless poultry or fish instead of fatty red meat and cured meats. Eat at home more than out so you know what you are getting and remember to fuel your body regularly, with several small meals instead of large over-portioned meals.
Research has come a long way in linking a healthy diet to reducingng the risk of complications in a range of chronic illnesses. Good dietary habits not only prolong life, from chronic illness like heart disease, which is the primary cause of illness related death, but also benefit health in even rare forms of cancer like mesothelioma. In fact, the most notorious culprit leading to chronic diseases or accelerating the course of an existing illness is obesity, which is directly linked to dietary habits.
The benefits of a healthy diet abound and it is because the foods contained in a well-rounded diet actually have protective substances that fight disease. For instance, the cruciferous vegetables, which includes broccoli, kale, onions, cabbage and cauliflower, contain specific compounds called isothiocyanates. The compounds counteract the toxic effects of cancer causing carcinogens that attack the cells in your body.
A 2009 study published in "Cancer Epidemiology Biomarkers and Prevention" found that study participants eating a healthy diet containing cruciferous vegetables had a lowered cancer risk, although ongoing research is warranted to find the exact relationship. But when it comes to improving your health, even the slightest chance that eating your veggies can make a difference is motivation enough to add them to your daily meal plans.
Another preliminary study from 2011, published in "Cancer Causes and Control" tested the effects of daily dietary fiber from grains on reducing the risk of cancers of the head and neck. The study found that a relationship exists, particularly for women. Whole grains are also well known for reducing the risk of heart disease related to high-cholesterol levels. Wheat bread, bran cereal and oatmeal are amongst the many whole grain foods you can add to your daily meals for protecting your health while also providing a nutritious source of energy.
Adopting healthier eating habits takes a little bit of know-how and a lot of action on your part. Keep it simple by choosing fresh vegetables and fruits over frozen, canned or packaged varieties. Fresh offers you the most body protective nutrients without the additives like excess sodium or sugar. Replace white grains with whole grains to boost your fiber intake, which is crucial for colon and digestive health. Opt for lower-fat versions of dairy and choose leaner varieties of meat like skinless poultry or fish instead of fatty red meat and cured meats. Eat at home more than out so you know what you are getting and remember to fuel your body regularly, with several small meals instead of large over-portioned meals.
“Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics"
Thank you for contacting me Melanie I enjoyed your article and I am sure others will as well. There are many foods out there for all types of diseases. My mom researched a lot for me before renal failure, during dialysis and now post transplant.
Eat well everyone!
Wednesday, December 14, 2011
AHHHHHHHHHHH!!!!!!!!!
I want to start this blog off a little different... I started this blog to let go of my thoughts and feelings and what I was personally going through on my journey. My blog is my out for the good times and the bad. I hope there are people that can read my blog and get something out of it. If anyone reading this right now doesn't want to hear the ups and downs don't read it, it's ok I am not offended by no means this is just my only way to let it all out because if I don't start blogging again I am going to hold it all in til I blow and it's not healthy and I don't like being this frustrated and angry.
NOW! For the past couple months things have just been being bottled up with work,pain, mentally draining. First, work and the expectations I expect from myself and I just beat myself up so much when something goes wrong. Health insurance issues how I am screwing it up for everyone when I know it is not my fault that I got sick none of this is my DAMN FAULT! I feel bad that people can't afford to spend the money because our rates are high but hell making me feel like a piece of shit and asking me to find new health insurance away from the group just pisses me off. I understand why they are doing it, to help employees but I am also an employee who is being made to feel like an outcast I know they don't mean to hurt my feeling but they are getting hurt.
Second, the pain I am feeling I don't know where it is coming from but it hurts. The pain is in my back and legs it won't go away and again THE DOCTORS WANT TO BLOW ME OFF. Well guess what that doesn't fricking fly with me not anymore not after what has already happened. I will get to the bottom of it with there help or not I will not give up and tell myself it's in my head...ITS NOT! They tried to give my Ibuprofen...Are they fricking kidding me look where that got me. I don't need another hose in my stomach anytime soon...AGAIN! My health is up to me and I will find out what is going on and I won't quit til I have an answer.
Last but not least my mental state. I have not lost my mind or anything but I am really having a hard time with the past 19 months...Dialysis and transplant. It has all been really hard on me, when I look in the mirror I don't see pretty I see this scared up person who just looks beat up and warn out. My scars make me cry looking at them knowing what I went through and just how hard it was. It has just drained me mentally. I can't clean out my dialysis room yet because a part of me has not excepted my kidney is mine and that it is not going anywhere. My room is like a "safe haven" for me. I am just so angry with everything I have gone through and the anger keeps growing daily since I have been holding it in. I am told not to focus on what I can't control but shit what am I suppose to do when everything that is bothering me I can't control so how do I get past it. I am just starting to always feel anxious yet I am so tired and I just need to take a step back. I did tonight when I was talking to my Dad he told me OUR scares are our metals and I need to be proud of mine and where them with pride. It's going to take time but I will one day take pride in my scares I just need more time. I am a 28 year old girl who's stomach is all scared up I just need time. But I will be there one day soon I know it.
I actually feel a little better but I am now 23 minutes past medication time so I need to go but I will be back good or bad.
THE MOST AMAZING NEWS UPDATE:
December 13th (my birthday) Steve got went into surgery at 6am for his liver transplant. A wonderful person that checked organ donor gave Steve the gift of life. Andre said he is doing great other than being doped up and groggy. That was the most amazing thing I could have heard on my birthday now I can say on my birthday I get to share this day with an amazing fighter who got his life back. I was born on December 13th and Steve got his life back. I am very happy to share this day with him.
NOW! For the past couple months things have just been being bottled up with work,pain, mentally draining. First, work and the expectations I expect from myself and I just beat myself up so much when something goes wrong. Health insurance issues how I am screwing it up for everyone when I know it is not my fault that I got sick none of this is my DAMN FAULT! I feel bad that people can't afford to spend the money because our rates are high but hell making me feel like a piece of shit and asking me to find new health insurance away from the group just pisses me off. I understand why they are doing it, to help employees but I am also an employee who is being made to feel like an outcast I know they don't mean to hurt my feeling but they are getting hurt.
Second, the pain I am feeling I don't know where it is coming from but it hurts. The pain is in my back and legs it won't go away and again THE DOCTORS WANT TO BLOW ME OFF. Well guess what that doesn't fricking fly with me not anymore not after what has already happened. I will get to the bottom of it with there help or not I will not give up and tell myself it's in my head...ITS NOT! They tried to give my Ibuprofen...Are they fricking kidding me look where that got me. I don't need another hose in my stomach anytime soon...AGAIN! My health is up to me and I will find out what is going on and I won't quit til I have an answer.
Last but not least my mental state. I have not lost my mind or anything but I am really having a hard time with the past 19 months...Dialysis and transplant. It has all been really hard on me, when I look in the mirror I don't see pretty I see this scared up person who just looks beat up and warn out. My scars make me cry looking at them knowing what I went through and just how hard it was. It has just drained me mentally. I can't clean out my dialysis room yet because a part of me has not excepted my kidney is mine and that it is not going anywhere. My room is like a "safe haven" for me. I am just so angry with everything I have gone through and the anger keeps growing daily since I have been holding it in. I am told not to focus on what I can't control but shit what am I suppose to do when everything that is bothering me I can't control so how do I get past it. I am just starting to always feel anxious yet I am so tired and I just need to take a step back. I did tonight when I was talking to my Dad he told me OUR scares are our metals and I need to be proud of mine and where them with pride. It's going to take time but I will one day take pride in my scares I just need more time. I am a 28 year old girl who's stomach is all scared up I just need time. But I will be there one day soon I know it.
I actually feel a little better but I am now 23 minutes past medication time so I need to go but I will be back good or bad.
THE MOST AMAZING NEWS UPDATE:
December 13th (my birthday) Steve got went into surgery at 6am for his liver transplant. A wonderful person that checked organ donor gave Steve the gift of life. Andre said he is doing great other than being doped up and groggy. That was the most amazing thing I could have heard on my birthday now I can say on my birthday I get to share this day with an amazing fighter who got his life back. I was born on December 13th and Steve got his life back. I am very happy to share this day with him.
Thursday, December 8, 2011
FABULOUS NEWS X'S 2
First and for most Laura aka Lula has found me! She was my other half when we were kids she lived behind me and well I lived behind here :). She was the best friend I ever had. She still has a place very dear to my heart. We have both been looking for each other and well she found me from Transplant Cafe and then my wonderful blog that I adore. It was great to hear from her and how she has been...She is a mama!! I really missed her and I am very thankful she is back in my life.
Second I received a call from the NKF today asking me to be in a testimonial video today and tell a little about my story and how they have helped me. I was SO NERVOUS I don't do good under pressure so I paused a lot so I hope I did good for them and made them proud. I hope I can help raise awareness. Kidney disease is everywhere and it can attack anyone. I can't wait to see the video when it is done I will post it!!!! It will be played at a fundraiser next Friday!!!!
Night all!!!!
Second I received a call from the NKF today asking me to be in a testimonial video today and tell a little about my story and how they have helped me. I was SO NERVOUS I don't do good under pressure so I paused a lot so I hope I did good for them and made them proud. I hope I can help raise awareness. Kidney disease is everywhere and it can attack anyone. I can't wait to see the video when it is done I will post it!!!! It will be played at a fundraiser next Friday!!!!
Thursday, November 17, 2011
Hi All
Hi all,
Just sitting here taking a break from making ornaments for Christmas...KIDNEY WINGS ORNAMENTS!!! They look great so far I will post them when I get pictures up. Tomorrow is the NKF Golf tournament I will be there volunteering with Lins,Char and Char's friend Victoria from Alaska. It will be fun. I was actually checking in to see if Alison has been on but the last time she blogged was 10/14 nothing since. I am thinking about her and a little worried I hope she is doing ok. Steve is doing ok he was moved to 2nd on the list so that is good and bad at the same time. I keep harassing him and checking in just to make sure they are doing ok and see if I can do anything. But they have been through this before. Well I am going to get to watching X-Factor and then read a little bit just started a book "The Blind Mirror" good so far hard to put it down. Well Alison if you are reading this let me know you are ok, I am thinking about you.
Just sitting here taking a break from making ornaments for Christmas...KIDNEY WINGS ORNAMENTS!!! They look great so far I will post them when I get pictures up. Tomorrow is the NKF Golf tournament I will be there volunteering with Lins,Char and Char's friend Victoria from Alaska. It will be fun. I was actually checking in to see if Alison has been on but the last time she blogged was 10/14 nothing since. I am thinking about her and a little worried I hope she is doing ok. Steve is doing ok he was moved to 2nd on the list so that is good and bad at the same time. I keep harassing him and checking in just to make sure they are doing ok and see if I can do anything. But they have been through this before. Well I am going to get to watching X-Factor and then read a little bit just started a book "The Blind Mirror" good so far hard to put it down. Well Alison if you are reading this let me know you are ok, I am thinking about you.
Friday, October 28, 2011
Thoughts for a friend
Shower thoughts
I was sitting in the shower thinking (have had a headache going on a week now so the shower helps) I was remembering when my dad told me I wouldn't remember the pain I had after the transplant because every time I would talk to him I just said PAIN dad so much, he would say it will go away and you won't remember the pain forever. As I sat in the shower I put my hand on my kidney closed my eyes and in a way I felt the pain I remembered the moments after my transplant. As dumb as this is going to sound I like being able to close my eyes feel my kidney and remember the pain because that pain was the most wonderful gift a person could ever receive that moment in my life when my uncle gave me his kidney it was beautiful the pain was there but like my dad said it will go away. He said when your mom's appendix burst she was in so much pain and she had complications, she had pain and a lot of it but pain is not forever which now I understand. I just want to remember it now and then I don't know maybe it is because I am still not "over" it just like how I can't clean out my dialysis room. Feeling the pain and thinking about it is ok to me it makes me more grateful for my gift and for the journey I have taken. I am sure people are reading this and thinking you are crazy but when I remember I think what I am putting in my mouth drinking water and just telling myself you need to take care of "lefty" he is a gift so don't take him for granted. I never will...
Wednesday, October 12, 2011
Jab!Jab!Jab!
Well last week I was play fighting with one of my friends and he jabbed me in the kidney. I fell to the ground and stayed down for about 5 minutes. It didn't register while we were messing around that my kidney was in my abdomen, come on who has there kidney in there abdomen. My kidney has been hurting since and I went in today blood work is stable but Dr. Loral was worried he said that jab could have flipped my kidney and killed it. He said the tiniest injury to the kidney could hurt it. He said I most likely have a bruised kidney and that's why it has been hurting he gave me some medicine and said keep an eye on my urine and let them know if anything changes and tell the my friend to stay away from my kidney. I told him I would go after my friends kidney if he hurt "Lefty" :). He also took me off of the Dapsone and Acycliver!!! Wahoo 2 pills taken off the list now 6 types of pills that come out to 17 pills a day! I have been having nausea and hot flashes so he thought lets get me off these 2 and see if that helps. Fingers crossed. Well I am going to go lay down need to take it easy just til the bruised bean heels.
Tuesday, October 4, 2011
Picked up medical records
Well I picked up my medical records last week and well going through them pissed me off BIG TIME. Just reading that every time they did a urinalysis they found BLOOD+++/PROTEIN+++. Plus you have there comments she is complaining of pain in her kidneys but did anyone ever do a damn thing no they blew me off to the point where EVERYONE was thinking I was making it up hell I even started to think maybe it is all in my head.i had to put the files down lol. I have so much anger and frustration with this whole thing. I am just having such a hard time "copping" and I am not sure why, I mean I was told that many people have a difficult time after transplant but I never understood til now. And I just really wish the pain would go away in my old kidneys but again doctors keep telling me there is nothing wrong it's in your head IGA CAN'T HURT!!!!!!!!! Well guess what... IT DOES!!!!!!!!!!!! Ok sorry I feel much better getting this out rather then keeping it bottled up :) Thank you to who ever is reading my frustration lol. ****DON'T EVER LET ANYONE TELL YOU HOW YOU FEEL OR WHAT YOUR FEELING ESPECIALLY WHEN IT COMES TO YOUR HEALTH!! :)
Friday, September 9, 2011
Doing a lot of thinking
Sitting here tonight doing a lot of thinking. I am tired, a lot of people think you have your transplant and your back to normal right away. Your not your still tired and your stamina is low it takes time to get use to the pills and to get all the energy back. I have been getting migraines a lot and HOT FLASHES while everyone is cold I am sweating plus my kidney hurts and my old ones still hurt. I know I will get my energy back with time I just wish I had it now but I am not going to push it's not healthy. Don't get me wrong this transplant was the best thing that happened to me it's just hard still sitting back not being able to do everything I want to do I know in time I will be able to do a lot of them but some I won't (like eating sushi) :) As dumb as it sounds I still can't wrap my mind around the past 2 years it seems so unreal I don't know how to explain it it's just weird. But GREAT NEWS my Dad had his thyroid removed Tuesday and he is doing FANTASTIC! I am glad everything went well with him though I was really worried about him but now that everything is ok that is all that matters. Well thank you for letting me vent a little and tell you all the good news about my Dad.
Thursday, August 4, 2011
Thursday, July 28, 2011
Doctors Apt
Had a check up yesterday everything went great. But my doctor did say something to me and I can't get it out of my head...You know if it wasn't for your Uncle you wouldn't be here. It's weird apart of me always felt like I don't know how much time I have I was so tired and just drained, at points I just thought today is my last day I can't go on like this. I just never realized how mentally and emotionally this journey would be. At first I was like oh this will be over in no time no big deal and well then it started kicking my ass and with all the denials add more ass kicking. I am just so thankful for every day now it was such an amazing gift (it was really the gift of life) I just hope my blog helps everyone who reads it know that it will happen it just takes time but this disease does prove just how strong we all are.
Monday, June 27, 2011
Alison
Alison...You are going to get your turn. I think about you often I don't just do my blog for me but I also do it for you. I don't want you to ever think you are alone I am here if you need anything. Dialysis is hard waiting for the kidney with all of the ups and downs that come with it is even harder but know that there is a light at the end. I think that is great you want to volunteer I am actually going to do the same I have to wait 1 year after transplant but I am thinking of giving my social worker a call from the dialysis clinic and asking if they have any volunteering I can do. Right now I am looking at going back to school to do something in the renal field. Anyways, I just want you to know I am here and I will keep blogging about how this is all going but please let me know how things are going with you.
Friday, June 24, 2011
Been awhile
It's been awhile since I have been on I have been working and just trying to get through each day, I have been so tired. I am thinking of going back to school not sure though. I know for sure I want to do something with dialysis or transplant patients. I keep thinking that would be a great career for me since I know what people are going through because I went through it myself. I just can't actually go to a school since I am still working full time. The kidney is doing great creatine is 1.3 it still shocks me how I went in and my creatine was 10 then in a matter of 4 days it goes to normal lol. Just fascinates me...I can't wait to see what they come up with next. Well sorry to keep it short but I am tired and want to lay down. CAN'T WAIT TIL MY STAMINA IS BACK!
Monday, May 16, 2011
In and out
Since the transplant I have been running into some problems. Just last week they thought i was rejecting and did and kidney biopsy come to find out it was Procraf intoxication so they stopped that and now have me on Rapimune while I was in the hospital my WBC went up (but they are pretty sure it was caused by steroids and not an infection at the biopsy) then my RBC wen really low but they gave me 2 EPO injections and now I am making it on my own but good news my creatine is going down which is fantastic! Today though i had a little episode at clinic I went out to talk to Alvina and schedule my next apt and got really light headed cold sweat and almost pasted out they had me sit down and they checked my BP and is was 84/69 so I sat there for a bit and they gave me chicken broth then Alvina walked me to Grandpa and he just had me hold on while I walked to the car. It was really scary I did not like that feeling at all. They stopped my BP meds and now I am just taking it really slow today since I am alone I just don't want to pass out. Breathing is a little difficult but I am just taking it easy. I slept pretty much all day today and I could go back to sleep now.
Tuesday, April 19, 2011
I HAD MY TRANSPLANT
I had my transplant April 13th! It was to most amazing gift but it was the most painful thing I have gone through. No more dialysis!!!! Instead a hand full of pills but swallowing pills is better then dialysis. Uncle Jim is doing good he is in pain but it is expected the took his kidney. Let me tell you his kidney "Lefty" makes me pee like I have never peed in my life. I will check in again soon I am just not feeling very well and the pain is coming back which means the Vicodon is wearing off. Thank you for all the prayers Uncle Jim and I appreciate it all.
Thursday, April 7, 2011
I GOT A KIDNEY!!!!!!!!!!!!
Tuesday, April 5, 2011
Kt/v
Had my results from my kt/v and the came back that I have a low average which means I would need to be on the cycler longer the other info was inconclusive. They also upped one of my BP meds because my dialectic number is in the 90's and has been for the past 3 weeks. Oh and he gave me something for the nausea it works a little but then it comes back with avenges. I have a fever and have kept it all day it doesn't seem to have anything to do with dialysis since my bags are not cloudy and I have no cramping pain in my belly so that is all positive. I'm still really tired and getting more crabby with certain "idiots" in the world but what are you going to do? You can't change people and there is NO reason I should be stressing myself over the petty things in life I have more important things I need to stay focused on...kidney and staying as healthy as possible and right now I am not. I miss my dad and he has only been gone for 2 days but it is nice having him around I wish my step-mom could come out too though. Well Uncle Jim landed and is resting at Grandpa's tests start at 8am tomorrow morning. Well I am going to go play with Maxy he looks like he needs a belly rub.
Monday, April 4, 2011
Weekend
Thursday, March 17, 2011
It's going to be rough
Had clinic today was kinda rough. I have not been feeling very good lately been having cramping in my legs and feet,fluid overload, and just been beyond tired. As I was telling Dr. M he asked me do your hands shake? I said yes but what does that have to do with anything, he then told me that is not good all my symptoms are telling them I am not taking to dialysis. So next week I have to go in for a kt/v so they can see if what they think is true. Being on dialysis I always joke about "dying" because if I don't find humor in being sick I don't think mentally I can handle it but now I am scared what if dialysis isn't doing the job? I just don't get it....I just want this all to be a nightmare and go back to a "normal" life. I am just so tired and frustrated with feeling this way I want to feel good I want to have energy I want to be able to act my age. Yesterday I had fluid overload really bad my face was huge and I just felt really bad I called my mom and told her I really feel like I am dying and I tried to laugh it off afterwards but honestly I felt like I was I just didn't feel right at all. This is all just beginning to be too much to handle mentally and physically. People can think I am being a drama queen or a baby but until you go through your organs shutting down you have know idea how hard it really is.
Thursday, March 10, 2011
WHY PEOPLE DIE WAITING FOR TRANSPLANTS From IHATEDIALYSIS.COM
WHY PEOPLE DIE WAITING FOR TRANSPLANTS
More than 3,000 Americans die each year waiting for organ transplants. One reason is that a government monopoly keeps the organ supply artificially low.
In January 1994 doctors at New York's Mount Sinai Hospital told Electra Tsucalas that her liver was failing. Her only hope was a transplant. Across the river in New Jersey, Tsucalas could have had a new liver in less than 3 months. In New York, she had to wait 15 months. By a miracle she survived. Others aren't that lucky. Last year 3,104 patients died waiting for transplants of all types. (For tips on how to make sure you aren't one of the unlucky ones, see box, p. 148.)
How lucky you are depends almost entirely on where you are. About 44,000 patients in the U.S. are waiting and hoping for transplants of all kinds; in Fort Worth, Tex., the wait for a kidney is only a few weeks; in nearby Dallas, however, the wait is more like a year.
Why don't the transplant hospitals simply harvest more organs? Or import them from other cities? Because they aren't allowed to under a 1984 law that took organ donation and allocation out of the hands of doctors, hospitals and patients and put it in the hands of a federal bureaucracy. The bureaucracy rules over a series of organ banks. The banks, with rare exceptions for kidneys,
aren't allowed to export organs if anyone in the local territory can use them. Thus a critically ill patient in one city might die while organs go to less desperate patients nearby. The system was supposed to insure the supply and fair allocation of organs. It doesn't work that easily.
Until about a decade ago federal government involvement was limited to Medicare reimbursement for kidney replacements. Doctors did relatively few transplants because patients' immune systems usually rejected the foreign organs. All that changed in 1983, when Sandoz Pharmaceuticals Corp. introduced cyclosporine, a drug that suppresses the immune system, thereby reducing the chances of rejection. Along with the sudden boom in transplants came fears that an unregulated market would benefit only wealthy patients. In 1984 Al Gore, then a U.S. congressman and a strong advocate of federal interventionism, demanded that the federal government step in to regulate transplants.
As often happens in such cases, policies intended to promote egalitarianism simply ended up making everyone worse off. Congress took the bait, and the National Organ Transplant Act of 1984 was passed. The act banned commerce in organs and put the Department of Health & Human Services in charge of donations and transplantation.
Faster than you could say "bureaucracy," the feds set up a network of 69 local organ banks to harvest and distribute organs. The allocation guidelines sound logical: A Richmond, Va. contractor called the United Network for Organ Sharing keeps a list of all transplant candidates. That list has all kinds of information, including how sick the patient is, his blood type, height, weight and what size organ the candidate needs.
Say a liver turns up in San Francisco. The Richmond organ network ranks suitable liver seekers in northern and central California based on how sick they are and how long they've been waiting. The local organ bank selects the sickest patient within the local territory who has waited the longest. The organ bank sells the liver to the hospital where the patient is waiting. No organ can be sent out of that territory, however, until every liver candidate has been considered, even if, say, a patient in southern California has a more urgent need. These arbitrary territorial limits are killers. Ask Dr. John Fung, a liver transplant specialist at the University of Pittsburgh Medical Center. Fung has more than 530 patients waiting for livers. Many come from other states, draining the local organ supply and making it harder for locals to get organs. In 1995 some 18% of Fung's liver patients died waiting, including many Pittsburgh-area patients who couldn't afford to go elsewhere.
"This system is so grossly unfair," fumes Fung, who says he went into medicine to avoid politics and now finds that the only way he can help his patients is to lobby for change.
Quite clearly the national demand for organs exceeds the supply. The chief source is patients who become brain-dead through accidents or other causes but have otherwise healthy systems. There are more than enough brain deaths each year-some 15,000, according to the Harvard
University School of Public Health-to take care of the 44,000 people on the transplant waiting list. In cases of brain death, the organs can be kept alive with a respirator that keeps the heart pumping. One donor can provide several organs, a couple of kidneys, say, and a heart, lung or liver. In 1994, the latest year for which figures are available, the federal system produced 5,100 dead donors, enough for 15,200 transplants. (The organs become available when the hospital calls the local organ bank to report a potential donor and the family consents.)
So why the interminable waits? In large part because of the bureaucratic centralization dreamed up by Gore and passed by Congress. A doctor cannot make a deal on his own to get an organ for a patient. The doctor must list his patient with the Richmond, Va. organ network, even if there is a potential donor in the doctor's own hospital. The donor's family simply turns the organs over to the local organ bank.
One consequence is that few hospitals have any incentive to encourage donors. Why bother when they won't be able to keep them for their own patients? Five thousand of the nation's 6,300 hospitals don't produce even one donor per year. Even the huge transplant hospitals aren't very good at it. In 1994 New York's Mount Sinai did 262 transplants of all kinds. But Mount Sinai (1994 revenues, $736 million) produced only two donors. Today 230 patients are waiting for livers at Mount Sinai. Last year some 30 Mount Sinai liver candidates died waiting. Many would have lived had Congress not wrapped the whole transplant system in so much red tape.
The basic problem is this: The government monopoly that runs the transplant market is terribly bad at creating supply to satisfy the demand. Each organ bank has a staff of "procurement coordinators" trained to sell grieving families on the idea of donating a loved one's organs to help strangers. It's a tough sell. And the coordinators are forbidden to offer compensation, not even to help with burial expenses. So the families of potential donors have no financial incentive to give.
In a recent survey by the Boston-based Partnership for Organ Donation, 52% of the families that refused said they didn't realize that their brain-dead relative was in fact dead. No wonder the yields are low.
"Our organ bank does not do a good job," says Dr. Byers Shaw, head of the transplant program at the University of Nebraska Medical Center in Omaha. Shaw, who received only 95 livers last year, says he could have used 200 more.
If Shaw is disturbed by conditions in Nebraska, he would be outraged by what happened in New York City. The New York Regional Transplant Program (1994 revenues, $10.5 million) is the organ bank that handles procurement at hospitals in New York City and its northern and eastern suburbs. Last year the board hired a lawyer to investigate the spending practices of Executive Director Bruce McFadden. Among the findings: In 1994 the organ bank staff spent $721,476 on travel, $353,449 on consultants, $153,182 for "conferences," $121,000 on public relations and nearly $1 million to renovate the offices, including a custom-made stand-up desk for McFadden.
More than half the organ bank's revenues come from Medicare and Medicaid. But what really worried the board wasn't the extravagances so much as one outlay that did a lot of good for patients: $30,000 to reward families who donated by picking up the cost of shipping the donor's remains home for burial. Under the federal law, payments for donations are a no-no. McFadden was allowed to resign. The New York situation may not have been typical, but it demonstrates how little the politically appointed bureaucracy is concerned with increasing the supply of organs.
Transplants have long been lucrative procedures, according to Burl-ington, Mass.-based Putnam Asso-ciates. Liver transplants typically run about $200,000. The federal government has found a way to keep a lid on demand. To get Medicare transplant patients, hospitals must promise to shun candidates with certain conditions. To get Medicare liver transplant patients, for example, they are expected to avoid liver seekers with diseases like cancer. Medicare recently came out against paying for lung transplants at centers accepting patients who have had chest surgery, are seriously overweight, smoke or have recently quit smoking. It's Medicare's way of rationing transplants for everyone.
In at least one sense the artificial shortage of organs caused by federal policy encourages high prices: What's scarce becomes more valuable, and price resistance vanishes. Given a better supply of hearts, livers, lungs and kidneys, more such operations would take place and the price might well drop.
An obvious solution would be for the government to get out of the way and let the market take over. Once doctors and hospitals could harvest organs for their own patients, there would be added incentive for doctors and hospitals to solicit for them. If they could offer money and other economic incentives, more families might agree to donate. Of course, this would inevitably lead to charges that the rich were buying organs from the poor. So if that totally free-market solution is unacceptable, there are less drastic changes that could increase the supply of organs and reduce the waiting time and the regional disparities.
At minimum, local organ banks should compete with one another so that there is more incentive to find donors. Also, the arbitrary territorial boundaries should be eliminated to let the organs go to the neediest patients. And the government should reward donors. Here's a good way: If you sign "donor" on your driver's license at age 18, you get to the top of the list when you need a heart at age 53.
ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
SURVIVAL TACTICS
If your doctor says you may someday need, say, a liver transplant, your first step is to find a
hospital with lots of experience, good survival rates and short waiting times. How do you do that?
The earlier you get on a waiting list, the more likely you are to get an organ before it's too late. So get the process going, even if your doctor says you do not need the transplant right away. Call the United Network for Organ Sharing (unos) at 1-800-24DONOR. Ask for a copy of the 1994 Report of Center Specific Graft and Patient Survival Rates (price: $115) or just the liver volume ($30).
This book tells how many liver transplants each hospital did between 1987 and 1991, what percentage of the grafts took and what percentage of the patients survived. The results vary considerably .
At Duke University Medical Center, for instance, fewer than 40% of the liver recipients lived one year. By contrast, at the University of Wisconsin Hospital nearly 85% of the liver recipients survived at least one year. And at New York University Medical Center nearly 90% lived at least one year.
Be sure to ask transplant hospitals for current survival rates, in writing. Once you've picked a hospital with good numbers, ask how long its patients usually wait. Insist on getting the overall average waiting time, then check it with unos. Demand a copy of the Analysis of Waiting List Registrations and Median Waiting Times.
If the hospital or unos puts you off, contact Judith Braslow at the Department of Health & Human Services Division of Transplantation (301-443-8036, or E-mail her at jbraslow@hrsa.ssw.dhhs.gov).
Some of the differences in waiting times are astonishing: In New York, for instance, the median wait for a liver is 308 days, while in Wisconsin, it's only 61 days. So, as good as nyu is, if you need a liver fast, you're better off in Wisconsin.
But before you go flying off to the Midwest, make sure the hospital doesn't rule you out because of your age or medical problems such as cancer, or alcohol or drug abuse. If you don't make the cut because of some arbitrary rule, use the unos book to check if they've ever transplanted anyone in your condition. Your doctor may be able to convince them to make an exception for you, too.
Next step: Figure out how your transplant will be paid for. Medicare pays for kidney replacements, with no age limits. But if you're under 65 you are not eligible for a Medicare heart, lung or liver, unless you have been disabled at least two years. So ask each center to estimate the price for your evaluation, transplantation, follow-up care and medicine. Then check your health plan to see if there are any coverage limits. Even with limits, there is some room for bargaining.
Next, have your doctor refer you to your first-choice center for evaluation. If they accept you, they'll send unos information on your age, sex, condition, blood type and a $325 computer registration fee. You can improve your chances of getting an organ quickly by listing at more than
one transplant center. Few doctors will tell you about this option. Only 5% of all patients multiple- list. But if you can afford it, you should.
Transplant candidates waiting in the hospital usually take precedence over those well enough to go home. So another way to speed things up is to get your doctor to put you in the hospital until an organ turns up.
Improve your chances even more by getting the transplant center you've chosen to import an organ from a foreign organ bank. U.S. transplant centers are allowed to use foreign sources as long as the donor is dead and the family receives no compensation. unos can provide you with a list of foreign organ banks if asked.
Finally, be available. A third of transplanted organs don't go to the first person on the list-often because when the organ turned up, the doctor couldn't get the patient on the phone in time. Carry a beeper all the time so when your turn comes, you'll be ready.
From unos, request copies of three brochures: "What Every Patient Needs to Know," "Questions Patients Should Ask" and "Financing Transplantation."
Waiting for an organ transplant
State Median wait % (days) transplanted*
Liver Where do you find the shortest waits? Kentucky 8 87.5 Iowa 20 81.6 Alabama 48 84.7 Utah 49 93.1 Florida 50 78.6
Where do you find the longest waits? Maryland 564 36.3 Illinois 358 43.1 Michigan 324 55.9 New York 308 49.9 Indiana 276 60.9
Heart Where do you find the shortest waits? Hawaii 0 100.0 Mississippi 27 75.0
Iowa 51 50.0 Oregon 74 78.8 Colorado 81 72.7
Where do you find the longest waits?
Indiana New York Connecticut Oklahoma Virginia
407 50.0 363 45.8 359 52.0 352 48.9 348 45.1
Kidney Where do
Oregon Kentucky Iowa Florida Arkansas
you find the shortest waits? 86 84.3
95 74.3 212 62.8 267 61.6 285 56.7
Where are you least likely to get a kidney? Hawaii ** 5.5 Puerto Rico ** 10.5 South Dakota ** 13.8 District of Columbia ** 18.5 Massachusetts ** 18.9
*Of patients listed in 1994. **So few of the kidney patients listed in 1994 have been transplanted that unos can't compute median waiting times for 26 of the 42 states, Washington, D.C. and Puerto Rico, where kidney transplants are done.
Source: United Network for Organ Sharing. ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
More than 3,000 Americans die each year waiting for organ transplants. One reason is that a government monopoly keeps the organ supply artificially low.
In January 1994 doctors at New York's Mount Sinai Hospital told Electra Tsucalas that her liver was failing. Her only hope was a transplant. Across the river in New Jersey, Tsucalas could have had a new liver in less than 3 months. In New York, she had to wait 15 months. By a miracle she survived. Others aren't that lucky. Last year 3,104 patients died waiting for transplants of all types. (For tips on how to make sure you aren't one of the unlucky ones, see box, p. 148.)
How lucky you are depends almost entirely on where you are. About 44,000 patients in the U.S. are waiting and hoping for transplants of all kinds; in Fort Worth, Tex., the wait for a kidney is only a few weeks; in nearby Dallas, however, the wait is more like a year.
Why don't the transplant hospitals simply harvest more organs? Or import them from other cities? Because they aren't allowed to under a 1984 law that took organ donation and allocation out of the hands of doctors, hospitals and patients and put it in the hands of a federal bureaucracy. The bureaucracy rules over a series of organ banks. The banks, with rare exceptions for kidneys,
aren't allowed to export organs if anyone in the local territory can use them. Thus a critically ill patient in one city might die while organs go to less desperate patients nearby. The system was supposed to insure the supply and fair allocation of organs. It doesn't work that easily.
Until about a decade ago federal government involvement was limited to Medicare reimbursement for kidney replacements. Doctors did relatively few transplants because patients' immune systems usually rejected the foreign organs. All that changed in 1983, when Sandoz Pharmaceuticals Corp. introduced cyclosporine, a drug that suppresses the immune system, thereby reducing the chances of rejection. Along with the sudden boom in transplants came fears that an unregulated market would benefit only wealthy patients. In 1984 Al Gore, then a U.S. congressman and a strong advocate of federal interventionism, demanded that the federal government step in to regulate transplants.
As often happens in such cases, policies intended to promote egalitarianism simply ended up making everyone worse off. Congress took the bait, and the National Organ Transplant Act of 1984 was passed. The act banned commerce in organs and put the Department of Health & Human Services in charge of donations and transplantation.
Faster than you could say "bureaucracy," the feds set up a network of 69 local organ banks to harvest and distribute organs. The allocation guidelines sound logical: A Richmond, Va. contractor called the United Network for Organ Sharing keeps a list of all transplant candidates. That list has all kinds of information, including how sick the patient is, his blood type, height, weight and what size organ the candidate needs.
Say a liver turns up in San Francisco. The Richmond organ network ranks suitable liver seekers in northern and central California based on how sick they are and how long they've been waiting. The local organ bank selects the sickest patient within the local territory who has waited the longest. The organ bank sells the liver to the hospital where the patient is waiting. No organ can be sent out of that territory, however, until every liver candidate has been considered, even if, say, a patient in southern California has a more urgent need. These arbitrary territorial limits are killers. Ask Dr. John Fung, a liver transplant specialist at the University of Pittsburgh Medical Center. Fung has more than 530 patients waiting for livers. Many come from other states, draining the local organ supply and making it harder for locals to get organs. In 1995 some 18% of Fung's liver patients died waiting, including many Pittsburgh-area patients who couldn't afford to go elsewhere.
"This system is so grossly unfair," fumes Fung, who says he went into medicine to avoid politics and now finds that the only way he can help his patients is to lobby for change.
Quite clearly the national demand for organs exceeds the supply. The chief source is patients who become brain-dead through accidents or other causes but have otherwise healthy systems. There are more than enough brain deaths each year-some 15,000, according to the Harvard
University School of Public Health-to take care of the 44,000 people on the transplant waiting list. In cases of brain death, the organs can be kept alive with a respirator that keeps the heart pumping. One donor can provide several organs, a couple of kidneys, say, and a heart, lung or liver. In 1994, the latest year for which figures are available, the federal system produced 5,100 dead donors, enough for 15,200 transplants. (The organs become available when the hospital calls the local organ bank to report a potential donor and the family consents.)
So why the interminable waits? In large part because of the bureaucratic centralization dreamed up by Gore and passed by Congress. A doctor cannot make a deal on his own to get an organ for a patient. The doctor must list his patient with the Richmond, Va. organ network, even if there is a potential donor in the doctor's own hospital. The donor's family simply turns the organs over to the local organ bank.
One consequence is that few hospitals have any incentive to encourage donors. Why bother when they won't be able to keep them for their own patients? Five thousand of the nation's 6,300 hospitals don't produce even one donor per year. Even the huge transplant hospitals aren't very good at it. In 1994 New York's Mount Sinai did 262 transplants of all kinds. But Mount Sinai (1994 revenues, $736 million) produced only two donors. Today 230 patients are waiting for livers at Mount Sinai. Last year some 30 Mount Sinai liver candidates died waiting. Many would have lived had Congress not wrapped the whole transplant system in so much red tape.
The basic problem is this: The government monopoly that runs the transplant market is terribly bad at creating supply to satisfy the demand. Each organ bank has a staff of "procurement coordinators" trained to sell grieving families on the idea of donating a loved one's organs to help strangers. It's a tough sell. And the coordinators are forbidden to offer compensation, not even to help with burial expenses. So the families of potential donors have no financial incentive to give.
In a recent survey by the Boston-based Partnership for Organ Donation, 52% of the families that refused said they didn't realize that their brain-dead relative was in fact dead. No wonder the yields are low.
"Our organ bank does not do a good job," says Dr. Byers Shaw, head of the transplant program at the University of Nebraska Medical Center in Omaha. Shaw, who received only 95 livers last year, says he could have used 200 more.
If Shaw is disturbed by conditions in Nebraska, he would be outraged by what happened in New York City. The New York Regional Transplant Program (1994 revenues, $10.5 million) is the organ bank that handles procurement at hospitals in New York City and its northern and eastern suburbs. Last year the board hired a lawyer to investigate the spending practices of Executive Director Bruce McFadden. Among the findings: In 1994 the organ bank staff spent $721,476 on travel, $353,449 on consultants, $153,182 for "conferences," $121,000 on public relations and nearly $1 million to renovate the offices, including a custom-made stand-up desk for McFadden.
More than half the organ bank's revenues come from Medicare and Medicaid. But what really worried the board wasn't the extravagances so much as one outlay that did a lot of good for patients: $30,000 to reward families who donated by picking up the cost of shipping the donor's remains home for burial. Under the federal law, payments for donations are a no-no. McFadden was allowed to resign. The New York situation may not have been typical, but it demonstrates how little the politically appointed bureaucracy is concerned with increasing the supply of organs.
Transplants have long been lucrative procedures, according to Burl-ington, Mass.-based Putnam Asso-ciates. Liver transplants typically run about $200,000. The federal government has found a way to keep a lid on demand. To get Medicare transplant patients, hospitals must promise to shun candidates with certain conditions. To get Medicare liver transplant patients, for example, they are expected to avoid liver seekers with diseases like cancer. Medicare recently came out against paying for lung transplants at centers accepting patients who have had chest surgery, are seriously overweight, smoke or have recently quit smoking. It's Medicare's way of rationing transplants for everyone.
In at least one sense the artificial shortage of organs caused by federal policy encourages high prices: What's scarce becomes more valuable, and price resistance vanishes. Given a better supply of hearts, livers, lungs and kidneys, more such operations would take place and the price might well drop.
An obvious solution would be for the government to get out of the way and let the market take over. Once doctors and hospitals could harvest organs for their own patients, there would be added incentive for doctors and hospitals to solicit for them. If they could offer money and other economic incentives, more families might agree to donate. Of course, this would inevitably lead to charges that the rich were buying organs from the poor. So if that totally free-market solution is unacceptable, there are less drastic changes that could increase the supply of organs and reduce the waiting time and the regional disparities.
At minimum, local organ banks should compete with one another so that there is more incentive to find donors. Also, the arbitrary territorial boundaries should be eliminated to let the organs go to the neediest patients. And the government should reward donors. Here's a good way: If you sign "donor" on your driver's license at age 18, you get to the top of the list when you need a heart at age 53.
ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
SURVIVAL TACTICS
If your doctor says you may someday need, say, a liver transplant, your first step is to find a
hospital with lots of experience, good survival rates and short waiting times. How do you do that?
The earlier you get on a waiting list, the more likely you are to get an organ before it's too late. So get the process going, even if your doctor says you do not need the transplant right away. Call the United Network for Organ Sharing (unos) at 1-800-24DONOR. Ask for a copy of the 1994 Report of Center Specific Graft and Patient Survival Rates (price: $115) or just the liver volume ($30).
This book tells how many liver transplants each hospital did between 1987 and 1991, what percentage of the grafts took and what percentage of the patients survived. The results vary considerably .
At Duke University Medical Center, for instance, fewer than 40% of the liver recipients lived one year. By contrast, at the University of Wisconsin Hospital nearly 85% of the liver recipients survived at least one year. And at New York University Medical Center nearly 90% lived at least one year.
Be sure to ask transplant hospitals for current survival rates, in writing. Once you've picked a hospital with good numbers, ask how long its patients usually wait. Insist on getting the overall average waiting time, then check it with unos. Demand a copy of the Analysis of Waiting List Registrations and Median Waiting Times.
If the hospital or unos puts you off, contact Judith Braslow at the Department of Health & Human Services Division of Transplantation (301-443-8036, or E-mail her at jbraslow@hrsa.ssw.dhhs.gov).
Some of the differences in waiting times are astonishing: In New York, for instance, the median wait for a liver is 308 days, while in Wisconsin, it's only 61 days. So, as good as nyu is, if you need a liver fast, you're better off in Wisconsin.
But before you go flying off to the Midwest, make sure the hospital doesn't rule you out because of your age or medical problems such as cancer, or alcohol or drug abuse. If you don't make the cut because of some arbitrary rule, use the unos book to check if they've ever transplanted anyone in your condition. Your doctor may be able to convince them to make an exception for you, too.
Next step: Figure out how your transplant will be paid for. Medicare pays for kidney replacements, with no age limits. But if you're under 65 you are not eligible for a Medicare heart, lung or liver, unless you have been disabled at least two years. So ask each center to estimate the price for your evaluation, transplantation, follow-up care and medicine. Then check your health plan to see if there are any coverage limits. Even with limits, there is some room for bargaining.
Next, have your doctor refer you to your first-choice center for evaluation. If they accept you, they'll send unos information on your age, sex, condition, blood type and a $325 computer registration fee. You can improve your chances of getting an organ quickly by listing at more than
one transplant center. Few doctors will tell you about this option. Only 5% of all patients multiple- list. But if you can afford it, you should.
Transplant candidates waiting in the hospital usually take precedence over those well enough to go home. So another way to speed things up is to get your doctor to put you in the hospital until an organ turns up.
Improve your chances even more by getting the transplant center you've chosen to import an organ from a foreign organ bank. U.S. transplant centers are allowed to use foreign sources as long as the donor is dead and the family receives no compensation. unos can provide you with a list of foreign organ banks if asked.
Finally, be available. A third of transplanted organs don't go to the first person on the list-often because when the organ turned up, the doctor couldn't get the patient on the phone in time. Carry a beeper all the time so when your turn comes, you'll be ready.
From unos, request copies of three brochures: "What Every Patient Needs to Know," "Questions Patients Should Ask" and "Financing Transplantation."
Waiting for an organ transplant
State Median wait % (days) transplanted*
Liver Where do you find the shortest waits? Kentucky 8 87.5 Iowa 20 81.6 Alabama 48 84.7 Utah 49 93.1 Florida 50 78.6
Where do you find the longest waits? Maryland 564 36.3 Illinois 358 43.1 Michigan 324 55.9 New York 308 49.9 Indiana 276 60.9
Heart Where do you find the shortest waits? Hawaii 0 100.0 Mississippi 27 75.0
Iowa 51 50.0 Oregon 74 78.8 Colorado 81 72.7
Where do you find the longest waits?
Indiana New York Connecticut Oklahoma Virginia
407 50.0 363 45.8 359 52.0 352 48.9 348 45.1
Kidney Where do
Oregon Kentucky Iowa Florida Arkansas
you find the shortest waits? 86 84.3
95 74.3 212 62.8 267 61.6 285 56.7
Where are you least likely to get a kidney? Hawaii ** 5.5 Puerto Rico ** 10.5 South Dakota ** 13.8 District of Columbia ** 18.5 Massachusetts ** 18.9
*Of patients listed in 1994. **So few of the kidney patients listed in 1994 have been transplanted that unos can't compute median waiting times for 26 of the 42 states, Washington, D.C. and Puerto Rico, where kidney transplants are done.
Source: United Network for Organ Sharing. ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
Wednesday, February 23, 2011
News
Well I have not been on in awhile and a lot has happened some good some bad but we will get through it. My dad was suppose to be down this week for the final tests and to schedule surgery but he called me on the 17th and told me the news neither one of us wanted to hear... My dad has Thyroid Cancer. It's very hard to say and think about that something could be wrong with him and it makes me feel like an asshole because I am upset that I have lost my kidney, it was so close but then I am upset because I don't want anything to happen to my dad. I would give anything if my dad would just get better even if that means dialysis for a while longer. I want to be strong for my parents my dad because he is going through it and my mom because she is the one next to him and taking care of him. My dad is being so strong and positive and I wish I could do the same but I just think CANCER! NO KIDNEY! I cry myself to sleep every night thinking about all of this and then I add the stress of people... jimmine it's hard to stay strong. This past 4 months have been the toughest but the greatest my dad and I have the best relationship ever and if it wasn't for him getting all these tests for me they would not have found the cancer because he NEVER goes to the doctor. So in a way I got to save him and he already saved me a long time ago, by calling me and just saying hey kid how ya doin, it's ok to cry and you will get through this. Him and I are both on a rollercoaster that we both want to get off of...which we will just need to hold on a little longer. We are both fighters and we will both kick the shit out of these disease that try to drag us down, they may drag us a little but we will get right back up and fight till we beat this battle.
On a little up beet level Uncle Jim is getting tests done. That is all I want to say since we have been down this road before so I don't want to jinx it. Also, Meg told me about a website IHATEDIALYSIS.COM OMG I LOVE IT!!!!!! SO many people I can talk to who know exactly what I am going through or who have gone through it, it's just nice to hear ideas on how to fix some issues I am having and it's nice to hear I HATE DIALYSIS just as much as the next person. lol
Well I am going to go to lay down and play words with friends and angry birds.
I love you dad and thank you for everything.
On a little up beet level Uncle Jim is getting tests done. That is all I want to say since we have been down this road before so I don't want to jinx it. Also, Meg told me about a website IHATEDIALYSIS.COM OMG I LOVE IT!!!!!! SO many people I can talk to who know exactly what I am going through or who have gone through it, it's just nice to hear ideas on how to fix some issues I am having and it's nice to hear I HATE DIALYSIS just as much as the next person. lol
Well I am going to go to lay down and play words with friends and angry birds.
I love you dad and thank you for everything.
Wednesday, February 16, 2011
Wednesday, February 9, 2011
Kevin & Tom
Last Thursday night, Tom Walter got in his car and began a 300-mile drive from Winston-Salem, North Carolina, to Atlanta. Wake Forest's baseball coach is well-acquainted with the rhythms of the road in general, and this stretch of highway in particular.
The road to Atlanta runs through small towns like Kings Mountain and Lavonia and Startex, towns where Walter and his coaches sift through the best local talent, looking for that one gem, that perfect fit. Most of the kids he meets along this highway go on to other schools, other lives. But a few come to Wake Forest, and those that do, become family.
On this Thursday night, though, Walter wasn't going to offer a kid a scholarship.
***
You know how the story starts. You've seen it a thousand times, in movies and TV shows and maybe, if you're lucky, in real life. Kid gets a scholarship offer to play for a big-name school. Coach takes a liking to kid, treats him like family. Coach stands up for kid, gives kid a chance that no one else could or would. So far, so routine, right?
That’s where this story takes a turn. The kid in this story is a baseball player from Columbus, Georgia, named Kevin Jordan. Recruited by Walter and his assistants to play ball for the Demon Deacons, the rangy outfielder first visited Winston-Salem possessed of rare confidence for a prep athlete. Part of that surely came from the fact that he was good enough to draw the attention of the nexus of the baseball universe –- the Yankees selected him in the 19th round last year -- but part comes from some deeper reservoir of calm.
A 2010 high school graduate, Jordan spent most of the spring of his senior year sick with what everyone told him was the flu. While his classmates were skipping class and counting down the days until graduation, Jordan was steadily losing weight and strength. After he dropped 30 pounds, his family took him to Emory University Hospital for tests. What they learned devastated them, shattering dreams of major-league stardom.
Kevin Jordan has ANCA vasculitis, a disease in which his own white blood cells began attacking his own tissues. Soon after the diagnosis, his kidneys began to fail, and by last summer, Jordan was on dialysis three times per week.
And still the disease marched on. In August, right about the time he began attending classes at Wake, doctors determined that Jordan's kidney function was down to eight percent. They recommended an immediate transplant.
Far, far easier prescribed than done. A kidney donation requires a match, and no one in Jordan's family matched up. Jordan was looking at joining the national registry. The United Network for Organ Sharing indicates that in 2009, 16,829 kidney transplants were performed in the United States, but nearly 86,000 people await a kidney, with a median wait time of four years. Those weren’t favorable odds for someone in Kevin’s condition.
The disease didn't wait, however, and it didn't respect Jordan's new surroundings. With the assistance of Wake Forest trainer Jeff Strahm, Jordan learned how to perform the dialysis on himself, and by August 2010, he was on the machine 18 to 20 hours a day.
It was right around that time when Coach Walter decided he ought to get tested.
“The simple fact that he showed up on campus demands so much respect,” Walter says. “For an 18-year-old kid to go through what he's gone through and just be on campus is an amazing story in itself. The level of commitment and sacrifice on his part demands the same from the people around him.”
***
This is one of those stories that could get drenched in sentimentalism, a tale that could be wrapped in evocative music and soft-focus, slow-pan camera work. It works, doesn't it? Coach learns he's a match and offers up his kidney for this kid he barely knows. This will be a heartwarming segment on half a dozen sports news channels before Memorial Day.
And that’s just fine. Lord knows we need stories of college coaches willing to give everything for their kids, rather than just ride them for two, three, four years and turn them out in favor of a new crop. People will hear of Tom Walter’s story, they’ll be amazed by it and him, and he’s cool with all that.
Just don’t go expecting him to think it’s anything special.
“This is something I would have done for any of my ballplayers,” he said. “There's not a kid on this
team, or a kid that I've ever coached, that I wouldn’t have done this for.”
If you think that’s just him saying that, maybe you should get to know Tom Walter a bit better.
***
Walter had some game of his own: A 1991 graduate of Georgetown, he was a four-year starter at catcher and outfield, a team captain, and a member of the 1991 Big East All-Academic team. As a coach, he set George Washington University’s record for wins with 275 against 124 losses. And by 2005, after coaching his alma mater for eight seasons, he’d taken the reins at the University of New Orleans.
2005. New Orleans. You see where this is going.
When Katrina hit, Walter gathered his team together and moved his base of operations 1,100 miles west, to Las Cruces, New Mexico. He struck a deal with New Mexico State University for his team to play in the fall semester there, and in the spring semester, the team lived out of hotel rooms in Mobile, Alabama.
“Our No. 1 goal all along was to keep the kids on pace for graduation,” he says. “We also wanted to keep the program moving forward. UNO baseball had such a great tradition, and I didn't want it to die on my watch.”
That season, despite calling three different states home, the team won 30 games for the first time in a decade. He spent five years at UNO before getting the call from Wake Forest in 2009.
A man stands by his team. It really is that simple.
***
To determine if you’re a kidney donation match, you need to undergo a battery of tests that can take more than a month. Fail even one of the tests, and you’re out. And every step along the way is another chance to bail, to decide that maybe you’re not quite so noble and self-sacrificing after all.
Starting five days before Christmas, Walter underwent cross-match testing, chest x-rays, CT scans and blood pressure monitoring. He passed every test, and on January 28, doctors proclaimed him a match for kidney donation.
Six days later, after clearing his decision with his family, his team and his school, he was on the road to Atlanta.
“I never once questioned the decision [to donate] from the beginning,” he says. “I got frustrated with the process, but never once said to myself, ‘What am I doing?’ In fact, it was the complete opposite. I would have been extremely disappointed for Kevin if I wasn't a match. It wasn't the 12th hour, but he was running out of options.”
Any time you’re talking organ transplant, you’re talking significant risk. The NKF estimates that the five-year survival rate for a transplant from a living donor is about 90 percent, but many live for decades more.
But it’s best not to think of the math that’s involved when you're talking about a college kid. Rather, focus on what he can do with the time he’s been given.
Both Alonzo Mourning and Sean Elliott returned to play in the NBA after kidney transplants, so it’s possible Jordan could return to the diamond. It’ll be months before he’s well enough to play at any competitive level. “It’s something that Kevin really wants, and I want it for him,” Walter says. “Nobody knows if he'll be able to play or not, but obviously, that's not the most important thing right now.”
For Walter, the prospects for recovery are more favorable. He should be able to get back to normal activities within the month. “I don't know how long it’ll be before I can swing a fungo bat or coach third base,” he says. “Not right away, let's put it that way.”
***
Monday morning, while everyone else in the sporting world was still debating Aaron Rodgers, tiny Vader and the Black Eyed Peas, Walter and Jordan went under the knife. Doctors took Walter into the operating room at 8:00 a.m, and Jordan followed 90 minutes later. The procedure began at 11:15, and 45 minutes later, Walter's role was done. By 4:00, Jordan was resting in his own room at Emory University Hospital.
“Both surgeries went very well,” Dr. Kenneth Newell, lead surgeon on the removal procedure, said afterward. “We are pleased with how each patient is progressing. We expect each will recover fully.”
Eight hours. That’s all it took. And now it’s done. Everyone’s moving on together. Everyone's around to move on together. That’s exactly how Coach Walter wants it, exactly how it ought to be.
The road to Atlanta runs through small towns like Kings Mountain and Lavonia and Startex, towns where Walter and his coaches sift through the best local talent, looking for that one gem, that perfect fit. Most of the kids he meets along this highway go on to other schools, other lives. But a few come to Wake Forest, and those that do, become family.
On this Thursday night, though, Walter wasn't going to offer a kid a scholarship.
You know how the story starts. You've seen it a thousand times, in movies and TV shows and maybe, if you're lucky, in real life. Kid gets a scholarship offer to play for a big-name school. Coach takes a liking to kid, treats him like family. Coach stands up for kid, gives kid a chance that no one else could or would. So far, so routine, right?
That’s where this story takes a turn. The kid in this story is a baseball player from Columbus, Georgia, named Kevin Jordan. Recruited by Walter and his assistants to play ball for the Demon Deacons, the rangy outfielder first visited Winston-Salem possessed of rare confidence for a prep athlete. Part of that surely came from the fact that he was good enough to draw the attention of the nexus of the baseball universe –- the Yankees selected him in the 19th round last year -- but part comes from some deeper reservoir of calm.
A 2010 high school graduate, Jordan spent most of the spring of his senior year sick with what everyone told him was the flu. While his classmates were skipping class and counting down the days until graduation, Jordan was steadily losing weight and strength. After he dropped 30 pounds, his family took him to Emory University Hospital for tests. What they learned devastated them, shattering dreams of major-league stardom.
Kevin Jordan has ANCA vasculitis, a disease in which his own white blood cells began attacking his own tissues. Soon after the diagnosis, his kidneys began to fail, and by last summer, Jordan was on dialysis three times per week.
And still the disease marched on. In August, right about the time he began attending classes at Wake, doctors determined that Jordan's kidney function was down to eight percent. They recommended an immediate transplant.
Far, far easier prescribed than done. A kidney donation requires a match, and no one in Jordan's family matched up. Jordan was looking at joining the national registry. The United Network for Organ Sharing indicates that in 2009, 16,829 kidney transplants were performed in the United States, but nearly 86,000 people await a kidney, with a median wait time of four years. Those weren’t favorable odds for someone in Kevin’s condition.
The disease didn't wait, however, and it didn't respect Jordan's new surroundings. With the assistance of Wake Forest trainer Jeff Strahm, Jordan learned how to perform the dialysis on himself, and by August 2010, he was on the machine 18 to 20 hours a day.
It was right around that time when Coach Walter decided he ought to get tested.
“The simple fact that he showed up on campus demands so much respect,” Walter says. “For an 18-year-old kid to go through what he's gone through and just be on campus is an amazing story in itself. The level of commitment and sacrifice on his part demands the same from the people around him.”
This is one of those stories that could get drenched in sentimentalism, a tale that could be wrapped in evocative music and soft-focus, slow-pan camera work. It works, doesn't it? Coach learns he's a match and offers up his kidney for this kid he barely knows. This will be a heartwarming segment on half a dozen sports news channels before Memorial Day.
And that’s just fine. Lord knows we need stories of college coaches willing to give everything for their kids, rather than just ride them for two, three, four years and turn them out in favor of a new crop. People will hear of Tom Walter’s story, they’ll be amazed by it and him, and he’s cool with all that.
Just don’t go expecting him to think it’s anything special.
“This is something I would have done for any of my ballplayers,” he said. “There's not a kid on this
team, or a kid that I've ever coached, that I wouldn’t have done this for.”
If you think that’s just him saying that, maybe you should get to know Tom Walter a bit better.
Walter had some game of his own: A 1991 graduate of Georgetown, he was a four-year starter at catcher and outfield, a team captain, and a member of the 1991 Big East All-Academic team. As a coach, he set George Washington University’s record for wins with 275 against 124 losses. And by 2005, after coaching his alma mater for eight seasons, he’d taken the reins at the University of New Orleans.
2005. New Orleans. You see where this is going.
When Katrina hit, Walter gathered his team together and moved his base of operations 1,100 miles west, to Las Cruces, New Mexico. He struck a deal with New Mexico State University for his team to play in the fall semester there, and in the spring semester, the team lived out of hotel rooms in Mobile, Alabama.
“Our No. 1 goal all along was to keep the kids on pace for graduation,” he says. “We also wanted to keep the program moving forward. UNO baseball had such a great tradition, and I didn't want it to die on my watch.”
That season, despite calling three different states home, the team won 30 games for the first time in a decade. He spent five years at UNO before getting the call from Wake Forest in 2009.
A man stands by his team. It really is that simple.
To determine if you’re a kidney donation match, you need to undergo a battery of tests that can take more than a month. Fail even one of the tests, and you’re out. And every step along the way is another chance to bail, to decide that maybe you’re not quite so noble and self-sacrificing after all.
Starting five days before Christmas, Walter underwent cross-match testing, chest x-rays, CT scans and blood pressure monitoring. He passed every test, and on January 28, doctors proclaimed him a match for kidney donation.
Six days later, after clearing his decision with his family, his team and his school, he was on the road to Atlanta.
“I never once questioned the decision [to donate] from the beginning,” he says. “I got frustrated with the process, but never once said to myself, ‘What am I doing?’ In fact, it was the complete opposite. I would have been extremely disappointed for Kevin if I wasn't a match. It wasn't the 12th hour, but he was running out of options.”
Any time you’re talking organ transplant, you’re talking significant risk. The NKF estimates that the five-year survival rate for a transplant from a living donor is about 90 percent, but many live for decades more.
But it’s best not to think of the math that’s involved when you're talking about a college kid. Rather, focus on what he can do with the time he’s been given.
Both Alonzo Mourning and Sean Elliott returned to play in the NBA after kidney transplants, so it’s possible Jordan could return to the diamond. It’ll be months before he’s well enough to play at any competitive level. “It’s something that Kevin really wants, and I want it for him,” Walter says. “Nobody knows if he'll be able to play or not, but obviously, that's not the most important thing right now.”
For Walter, the prospects for recovery are more favorable. He should be able to get back to normal activities within the month. “I don't know how long it’ll be before I can swing a fungo bat or coach third base,” he says. “Not right away, let's put it that way.”
Monday morning, while everyone else in the sporting world was still debating Aaron Rodgers, tiny Vader and the Black Eyed Peas, Walter and Jordan went under the knife. Doctors took Walter into the operating room at 8:00 a.m, and Jordan followed 90 minutes later. The procedure began at 11:15, and 45 minutes later, Walter's role was done. By 4:00, Jordan was resting in his own room at Emory University Hospital.
“Both surgeries went very well,” Dr. Kenneth Newell, lead surgeon on the removal procedure, said afterward. “We are pleased with how each patient is progressing. We expect each will recover fully.”
Eight hours. That’s all it took. And now it’s done. Everyone’s moving on together. Everyone's around to move on together. That’s exactly how Coach Walter wants it, exactly how it ought to be.
Tuesday, February 8, 2011
Great news
Well surgery is scheduled! It is great news but my anxiety over the surgery is taking over my joy. I told Johnna today when I went to get my labs and she started screaming. It was pretty funny she was very excited and told me to start pounding down the protien and Vitamin C and to make sure I am extra careful not to get peritonitis because if I do get that infection I have to wait an extra 2 weeks to make sure I have no infection. I am going to have to miss the walk which SUCKS since I really wanted to go and be there but the kidney calls. I wish I would stop having panic attacks but I have never had surgery and it scares the hell out of me tubes down the throat, waking up during surgery, not waking up after surgery, catheter, I talked to my parents last night as they were trying to calm me down and explain it is ok to have these thoughts and concerns but instead of going crazy for 2 months maybe I should talk to an anesthesiologist and tell them what my fears are. My Dad on the other had has absolutely no fear he said he is 100% ready for this, he is ready to give me my life back. It is weird I can't remember what it is like to feel good, not be sick. Last time I was feeling good was I think 6th grade just sucks that it took them so long to figure out what was wrong and by that time it was a little late even though we didn't know it. My parents and I keep saying we thought renal failure wouldn't happen til I was in my 40's but like my Mom said if it would have happened then my Dad wouldn't have been able to donate at that time so it was actually good that it happened now rather then later. This illness has made me grow up and I wouldn't change it for a second. This has shown me that I am stronger then I thought. Well I am going to go take a Xanax since the panic attach has not gone away I am really going to have to hunt down the anesthesiologist. lol I just don't know how to thank my Dad for doing this for me.... I am getting my life back very shortly.
Monday, January 31, 2011
Chain baby!
Dad just called and told me it is going to be a THREE WAY! There is one donor in AZ, Dad in CA, and Donor in OH. All recipients are down here. My dad will be here 2 weeks from tomorrow. This is such any amazing feeling my dad and I are both curious if we get to meet everyone after the donation process. This is such an amazing feeling and I am so happy that I get to share this experience with my dad. This whole process has brought me and him so close and it will bring us even closer. This is...well it's so hard to explain what we are feeling right now but it is mind blowing. My dad is giving me the BEST gift anyone could ever give...my life back.
Saturday, January 29, 2011
Time
Well the girl passed her glucose which means dad gets to schedule to come out here for the last couple test and if they both pass I will be getting my kidney. Oh I can't wait for the day where I feel 100% no more kidney pain, no more leg pain which I have right now and let me tell you it is not a good feeling. I have this aching pain in my legs I think I am going to go sit in the shower and see if the heat helps. I am just so sick and tired of being in pain all the time hopefully I won't be for much longer. I am also starting to have a little pain in my belly where the hose is but nothing is coming out and my bag is not cloudy so for right now I will just keep an eye on it. It's time now if I don't get this pain to go away Sas is going to have a big cry baby on his hands.
Monday, January 24, 2011
Today
Today was a slow day...Felt really tired. I don't feel like the weekend did me any good I still feel exhausted. I just hope this is all over soon but I know that this can all still crumble. Last clinic they told me my kidney function was getting worse and dialysis was not doing 100% the job so they are kinda hoping this transplant comes fast or try and put me on the cycler. I don't really know what to think or say all I know is I am just so tired and I really want a kidney or break. I think I am going to go lay down again I can barley see straight. Just not sure how much I can keep going and going and going. I need more rest than what I am getting.
Sunday, January 16, 2011
Craving
I am watching the Simpsons doing laundry and CRAVING a cheeseburger and mcflurry lol. There are those days where I have to have red meat but not that often. Right now I want to dip my burger in the mcflurry. Sas had to go to Homedept so I asked him to get me those two tasty treats from Mcdonalds. Today was a pretty lazy day I am having some pain in my kidney area so I just laid down and sat in the shower to try and relax it totally helps until I get out then I feel like butt all over again. I just keep telling myself this is almost over I don't have to deal with this too much longer. My belly is all in knots just waiting to hear about the paired donor. Another little issue I am having my heart feels like it is beating out of my chest and going a mile a minute...I forgot to take my meds I know I need to get better with that especially since I will have to take the anti-rejection meds but I always forget to take them on weekends week days I usually always remember. Anyways enough chatting I am going to go fold clothes and take out my last bag for the day.
Saturday, January 15, 2011
Almost there
Well we are almost there...Monday the girl for the paired gets her Glucose testing and if everything goes well Dad can come out here and finish up some minor testing and we can all be scheduled for surgery. I am...wait WE are all hoping this is it. Dads not sleeping I am not sleeping we can both use a peaceful nights rest. My leg pain seems to be getting worse so I plan on Googling to see if there is anything I can do for it still have a major headache but I think it is just STRESS I have so many knots in my back and neck it is not healthy. Feet are starting to cramp up which is caused my dehydration so I am drinking water but not to much and not to fast NOT in the mood for fluid over load. I am really looking forward to Meghan coming out in March that will be really relaxing just hope I have my new kidney by then I know for sure I will still have the damn hose in so that means no lazy river but we can for sure find a lot more to do and hell I won't complain because I will have my kidney. Well I am going to go Google and then off to do my transfer. Night.
Tuesday, January 11, 2011
Been a while
Well it has been a while since I have been on. Mom came in town and we all went to Thai Friday night and Black Swan on Saturday. Black Swan was AMAZING! It was great to hang out with sissy and mom. I have been kinda down lately Trina was denied and that was really hard to take but the positive is my dad is still in the running for the paired we should hear more next week. Mentally I feel like this is getting more difficult I feel like we go up one and down three. I just feel myself breaking a little every day and it is hard to stay positive when people keep getting shot down. My legs started hurting again and I am so tired it is ridiculous I pass out on the couch every night. Johnna told me I should be the poster child for PD patients lol. She is like look at you, you work, you go to movies, you take your little sister shopping. I go go go till I can't go no more. Today for some reason I can't get over that there is a long ass hose sitting in my stomach and I can feel it and it is uncomfortable but I know I really can't feel it, it is all in my head it is just really bothering me and I can't get the my mind over the matter. Let's change the subject I tried a new chicken recipe... boneless skinless chicken breast with Mrs. Dash and some Lemon Pepper 375 for 35 mins Yum Yum if anyone is interested let me know best part NO SALT and it had a lot of flavor Steven even loved it and that says a lot but of course he salted his it's Steven he can't live without it. Tonight I am making Parmesan chicken. Mind back on the hose lol I really need to stop thinking so much. Well I better get back to dinner... Night all.
Monday, January 3, 2011
Still sick
Had a horrible day at work felt like complete shit. I am still feeling like shit... my jaw is killing me and my neck and head hurt not to mention my nose is stuffed and I am exhausted. I didn't fall asleep til midnight and then I woke up at two walking around not being able to breath. One major positive Sas made me sspaghetti and that was GREAT I thought about it all day. A nice warm bowl of spaghetti felt so good in my belly. Being sick and being on dialysis sucks! For some reason I could swear that it emphasizes the cold. I feel ten times worse when I am actually doing the transfer I just feel so much pain I think it is the achy body. My legs are starting to hurt now lol I am a cold wreck. Well like last night I am going to go start whining to Sas (been doing it since we got home) I feel like such SHIT! Good night!
Sunday, January 2, 2011
Gotta a cold
Damnit! I have a cold again. My nose is stuffed, sore throat, chills, cough, achy body. I hate having a cold I don't like not being able to breath. On top of that what if they call and have a kidney I would have to deny it since you can't have any type of infection before transplant or during. Completely understandable but I want my kidney! But I wouldn't want to go through the surgery and take a kidney that could have been used for me or someone else so I am just going to have to try and get better as quick as possible. Last night I finally filled out my power of attorney for my health. Never thought I would have to do that at 27 but I would rather have the right people in control. So they know everything I want and won't have to talk it over with anyone because I have already decided. Man I have become such a responsible adult...lol. Well I am going to go whine to Sas about feeling like shit. Good night all.
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